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| Vintage Brain Surgery illustration, via Scientific American Magazine |
Here's Part 1.
And here's the rest:
“There have been great advancements
in the area over the last ten or so years,” he continued, “and outcomes can be
significantly more positive than they ever were.”
I
shifted in my seat, nodded my head, probably asked a question. I had done a lot
of reading but knew only a little about brain surgery.
“Basically,
there are two ways to go: a corpus collosum or complete hemispherectomy.” Dr. N
swiveled around in his chair and reached behind him for one of those replicas
of the human head, similar to the one my mother had in her closet when I was a
little girl. That one was made of Styrofoam, I think, and she used to put her
wig on it, when wigs were popular and even normal people wore them, like
jewelry or a belt. Dr. N’s head, though, was skin-colored and while it wasn’t
really lifelike, it was a lot creepier than my mother’s. At the top of the
head, a red line bisected the head and ran down the back, toward the neck. It
was this line that Dr. N traced, showing me.
It
was also about then that I started feeling really strange. I was asking
questions, I’m sure, intelligently, because I’m good at that. I’m not
particularly emotional with doctors and am able to keep my composure despite
the gravity of the situation. I felt all tingly, though, and was straining to
hear his words. It was almost like when the dentist placed the laughing gas
mask over your mouth before a procedure and his voice sounded like it was
coming from the far end of a tunnel. Dr. N, though, unaware of anything strange
going on, continued.
“You
see this line going down the center? That separates the right and left
hemispheres of the brain. Now, in a corpus collosum, you can basically snip
that line and actually break the connection between the two sides. If you do
that and it works, whatever side of the brain the seizure originates will stay
there, not travel and affect the whole brain.”
Snip,
snip, I think and right about then my head separates from my body and
floats on up over me, over the desk and Dr. N and hovers there, gently looking
downward.
“Now,
in a hemispherectomy, what you’re basically doing is cutting out the entire
right or left hemisphere of the brain and then filling up that cavity with
fluid.”
Since
my head is floating over my body, I actually see myself, nodding, murmuring,
leaning forward and watching Dr. N trace the red line down the brain, turning
it in his hands. I see my mouth move, talking to him, but I can’t hear what I’m
saying. I’m impressed, though, that I am talking at all about such a
thing. The difference between snipping the connections and removing the entire
hemisphere. Of my baby daughter’s brain.
I
don’t remember when my head or my consciousness rejoined the rest of my body. I
don’t remember how or when I walked out of the doctor’s office that day. I do
remember knowing that I had had a strange out-of-body experience that some
might call dissociation but to me was just part and parcel of the whole reality
of caring for Sophie. Is there any other way to respond when you’re discussing
brain surgery on a child?
People come up to
me periodically, whenever public television airs some special or they read about
the miracles of brain surgery.
“I
saw this program last night,” they’ll say, “and this kid had this weird
syndrome where she seized basically all the time. Well, they took out her
brain, I mean half of it and the other half just picked up where the removed
one left off, and now she’s great! Have you ever heard of that or thought about
it for Sophie?”
I
listen to this kind of enthusiasm politely, explaining that Sophie is actually
not a good candidate for brain surgery because her seizures are multi-focal,
meaning there isn’t one or even two spots where they originate. There are many.
But, actually, what I really want is to scream, “Are you fucking out of your
mind? Do you realize what you’re talking about? What they’re doing? Taking out
a chunk of a person’s BRAIN? A child’s brain, who can’t even make that decision
herself? How incredibly invasive that is? How utterly horrible?”
Yes,
yes, I realize that science can work miracles and that many people’s lives are
saved and the quality of their lives is vastly improved. But I can’t quite wrap
my own brain around the idea of cutting some of it out. Isn’t who we are
somehow encoded in our brain, in that organ? Would cutting it out inevitably
“change” that essential part of us?Right? Or not? Where I really get stuck,
though, is how to make that decision for another person. Because despite the
fact that Sophie is my daughter and, at the time, was an infant, and her father
and I have the responsibility to make decisions regarding her welfare, I
believe deeply in her personal integrity, her autonomy, the idea that she
exists, complete and whole. Who am I or who are these men and women who make
these decisions to cut out an essential part of who she is and discard it?
Arguments, I know, could be made that I am ignorant, that the brain is an
incredibly plastic organ, capable of regenerating, compensating and recovering
to an incredible degree. I think that if it were a question of life or death, I
would surely take the chance on life. Yes, yes, take it out, I’d say, if
that will save her. Anything to save her.
Thank
God I never had to make that decision, though, so I can nod my head when people
tell me about the miracles of brain surgery. I’m struck by how casually we all
live our lives, really, in these advanced times. We can sit in doctors’ offices
and intelligently debate the difference between cutting the corpus collosum and
the hemispherectomy. We can watch a two hour special on a network newsmagazine,
believing that those people’s lives are so amazing, can you imagine?
While sitting in the dentist’s chair, waiting to get a cleaning, we read an
article discussing the ethical decisions regarding a woman’s face transplant. I
feel like we were taken from the casual life eleven years ago when Sophie was
first diagnosed and dropped into this one of
constant impossible decision-making and a low grade anxiety broken only
by the adrenaline rush of true crisis.
And it’s no wonder, then, that my own brain was able to so effortlessly
release itself that morning – Snip Snip -- in the doctor’s office, let
go for a minute and watch, observe from a different position.
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